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Thursday, September 12, 2013

Talk About Your Plenty, Talk About Your Ills

It's been a pretty amazing few weeks with several big milestones. I didn't intend to blog so soon after my last entry, but the news is too good not to share. Plus, there's a call to action.

So here's the latest and greatest:

First and foremost, I saw Dr. Damon on Monday and finally got two pieces of info I've been waiting to hear for a long long time:

He said, "I really don't see your AML ever coming back" <--- ding ding ding ding!
He said, "I think we can get you off the tacrolimus" now

Now we've all known -- or at least I have -- that the first bullet was coming, but it was really great to hear. The second bullet, for me, really symbolizes my full recovery. Once we're completely off the tac, two other meds can be phased out too. Here are the specific post-appointment instructions:

1. Decrease tacrolimus to 0.2 mg 3 days per week for 2 weeks - if you are fine, then stop tacrolimus.

2. Contiune Gleevec at 200 mg daily

3. Continue Acyclovir at 800 mg daily

4. 2 weeks after stopping tacrolimus, then stop fluconazole

5. 4 weeks after stopping tacrolimus, stop septra

6. Return to clinic in 2 months

You kinda get used to taking a crapload of meds when that's what you have to do, bur I'm ready to be done with them. Going from 5 meds to 2 will be huge. Of course I'll probably need to be on the Gleevec for some time, and all I can say is, thank goodness for top-notch medical insurance -- that 200mg of Gleevec daily costs about $4200/month! My co-pay? $20. Jeez'l peez'l.

Next, and arguably more important, my donor Martin and his girlfriend Jenny had their baby! Welcome, Simon! He almost feels like a nephew! :) He was born a few weeks early, but he's doing just fine. Here are some pics of the little guy:

Cute, little Simon

Happy Jenny and the little guy

As soon as they get him home, I'm sure we'll have some pictures of Martin holding him in his Eagles, Phillies, or Flyers gear. We know he'll be all safe and snuggly with his Eagles bear:

Snuggle, Simon Snuggle, on the road to victory!

In other news, Floyd and I have been doing regular Garage Band sessions on my new iMac. How appropriate that this happens in the garoffice?

Here's Floyd tracking some vocals and playing along to a Phish loop I sequenced. He can actually play a simple (4 or 5 note) melody over a little loop. Pretty cool.

oh my goodness -- it has been such a busy summer, i just realized i had at least three of these posts to catch up with. and they are full of such fun, exciting FRIGGIN' AWESOME news!!!

:)

sending big hugs to you and your family, and martin and his family, too. wow... talk about a long, strange trip!

congrats on kicking some of those meds off the list, for forging ahead with your health and amazing attitude, and for the blessing of getting to meet your donor (who sounds like an awesome, awesome person).